Who is the activist who wasn't honest about her past?

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Autism Women's Network posted a statement about some activist not being honest about her history and such. I have no clue who it is about but I would like to know who it is. Can somebody tell me, please? What exactly did she exaggerate or lie about?

AWN's statement

I don't know who the person is (can think of several who might fit), but FC and RPM should be constantly questioned as valid communication methods.

Sorry if this is a tangent, but FC is facilitated communication, which, as I understand it, has been demonstrated to be a human ouija board in all rigorously tested cases. But what is RPM?

I would really like to know what FC and RPM is. Why should they be questioned as valid communication methods?

RPM is the Rapid Prompting Method. It involves getting non-verbal children to communicate by pointing to letters on a letter board, while the letter board is moved in air (for a "visual kinesthetic prompt" -- whatever that is). It was created by an Indian mother for her non-verbal son. The boy has since published multiple books, including a book of poetry, via RPM.

I have some exposure to the "method", as there are several parents in my area who swear by it. Supposedly, these kids are geniuses trapped in bodies that won't or can't communicate and they start showing remarkable intelligence after starting RPM (with one 10-yr-old writing poetry when only a few months prior he did not even know his alphabets) ! Ido Kedar from Ido in Autismland claims to have overcome his communication challenges via RPM. There is also another kid - Michael Weinstein - who spent years in a severe autism class, doing crafts and learning functioning skills, who went on to win the Texas state-wide science fair in middle school, after his mother "discovered RPM".

At this point, I am very skeptical about RPM but hold my tongue. As the parent of a completely non-verbal child, I know that hope is an aphrodisiac and I know that these parents just need hope. However, I do warn fellow parents - that they should get their child to graduate from pointing to a moving letter board to independent typing ASAP.

I don't want to go into too many details (for privacy reason) -- and this is all hearsay, as I have no first hand knowledge or information, and only heard about this from someone who alleges to be a victim -- but RPM was supposedly used to allege a crime some time ago, with the accused spending several days in jail before the judge threw it out as utter nonsense. But the accusation -- per the purported victim -- supposedly caused untold anguish and a lot of anger in everyone involved.

I briefly explored RPM and I think there may some use to the method, but it needs to be investigated more closely. Parents should be warned that RPM could be used to "put words" in a non-verbal child's mouth, if the "communication partner" was untrained, inexperienced, or just had ulterior motives. Also, the method requires that "parents should presume competence". I get that, but what I don't understand is how parents begin to make fantastic claims about their brilliant children who are doing middle school math or high school physics within a few months of RPM, while they spent years of not even being able to recognize their own names, despite intensive intervention / training. Also, when children are unable to show their "mettle" with someone other than a parent or a long-term aide, the parents claim "performance anxiety" or accuse the "communication partner" of "not presuming competence" which, in turn, allegedly "upsets the non-verbal genius" who is therefore refusing to perform for a "non-believer". OR, they claim that the "communication partner" is not "mathematically strong" or is "science challenged", which, in turn, supposedly affects their own children's performance ! !

When I hear this (and I do so fairly often), I gently remind the angry parent that Anne Sullivan had minimum education, but was able to help Helen get a Bachelor's degree by signing the lectures, fast and furious, into the palm of Helen's hands, so the education level of the "partner" should not matter (and then I wonder why I am so unpopular, LOL) ! These parents also fight with districts to permit their kids to go to school with their own parent-funded aide or even to take exams with a parent-picked "communication partner", and not state-/ district-approved scribes.

As Judge Judy say, "If it walks like a duck, and it quacks like a duck..."

In any event, extraordinary claims require extraordinary proof. I don't know of any studies performed on the efficacy of RPM, but I wish there would be one - to protect both the children and the parents. As I speak, there are "workshops" being held in this area on how to pay for RPM "sessions" with practitioners, which are not cheap by any stretch of this imagination. So, it's a shameful drain of resources, until proven and backed by research. Therefore, IMO, at this point, RPM should be approached with caution and with scientific inquiry.

Thanks, HisMom.

It sounds like RPM is another form of human ouija board, AKA ideomotor phenomenon.

https://en.wikipedia.org/wiki/Ideomotor_phenomenon

http://www.theguardian.com/science/2013 ... -detectors

I'm guessing it's Amanda Baggs. I've heard a lot of rumors about her being fake.

They should identify who is the person, so others can avoid their other false broadcasts besides the ones on AWN. I think there are many hoaxes in autism community, unfortunately. Or some hoaxes are not purposeful, but super wishful thinking.

It says "activist" who may also be a parent or guardian of a non-verbal child who purportedly showed his or her genius via RPM (or FC) ? If so, then the person may not have intended to pull a hoax. S/he may have genuinely believed that their child or charge or ward was truly communicating his or her own thoughts and ideas via FC or RPM.

But I agree with you. This hush-hush handling of this situation is only going to lead to rumours and confusion. AWN should come clean and identify the individual so that others may evaluate their "hoax" and make the right decision wrt FC or RPM.

The way the post (by AWN) is worded makes me suspect that some sort of "facilitated communication" was involved, which led to FC and RPM being specifically mentioned. I have my own list of suspects, but could be wrong -- there are too many FC / RPM users and advocates out there. Unfortunately.

Only person I can think of is Amanda Baggs. There has been a lot of controversy about her and people claiming they knew her as a kid and how normal she was and how verbal she was. Perhaps they mean her?

Regardless of who the individual was / is, the fact remains that s/he was able to reach a wide audience with the unwitting cooperation of AWN.

What I don't understand is how people can be so naive as to trust 100% a random person that they met online and to introduce / allow / promote that person on their website / blog without vetting that individual thoroughly and not doing their due diligence to research the person, their background and their claims.

It's one thing if some X met some Y online, got cat-fished, and discovered the deception at steep personal cost. But when an entire organization is "cat-fished" and they have unwittingly permitted this person to use their forum to reach a wide and large audience, to perpetrate his or her scam, then I blame that organization, and not just the individual. This person could never have hoodwinked this many people had they not had a respectable organization's "stamp of authenticity and approval". And, this would not have happened had AWN taken the time, the energy and the effort to research that person first, and promote next.

I am very disappointed, and believe that regardless of their "well, we published this person's articles in good faith" claims, that they hold some of the responsibility for this scam. Also, I think that they should identify who this person was -- they claim to have deleted all of the individual's writings from their blog -- but many parents may have downloaded articles and may still be referencing them without realizing that they were written by someone without a shred of integrity and that not a word from them is to be trusted (the person's groveling apology on yet another Facebook page, notwithstanding).

Moreover, their refusal to identify this individual is only resulting in more speculation and wholesale suspicion of all the "activists" that they have ever championed, which is not at all fair to the genuine ones who work hard to further disability rights world-wide.

It will do no good to disclose this persons' identity. They are no longer active in Autistic community. It is NOT Amanda Baggs, and their actions in NO WAY put into question the validty of FC or RPM. That is all I feel comfortable to say.

If it's true that it would do no good to disclose this person's identity, they probably should not have made a public statement at all. The way this statement is worded it can only produce endless speculation and some of that may be harmful.

They could have just pulled the content and responded to any questions with a comment that a review found some problems.

HisMom, your comment suggest an outlook that is totally bounded by corporate culture. "Due diligence" is not a legal concept that enters the thinking of most loose networks of community organizers. Most small activist organizations don't have a General Counsel or policies for vetting anything. Autism Speaks is based on a big dollar corporate model and surely has an OGC, but most activist networks are worlds away from that in structure, outlook and organization.

Pretty much everything about FC and RPM puts into question FC and RPM as valid methods of communication.
Belief in FC and RPM by some autism advocates is like belief in vaccines causing autism by some parents of autistic children.
The behavior and thinking patterns are the same: ignore large amount of evidence against both, hold onto belief, and shame/exclude those who don't believe.
I don't know how such a thing has become seemingly entrenched in autism community.
It seems that evidence from childhood/teenage years also suggest Amanda Baggs as a hoaxer.
She seems extremely munchausens from her blog posts.

Thank you for your replies!